I want to hear from people who have been misdiagnosed with the CIDP, GBS, or similar syndromes attacking the same nerves. Even if you weren't diag. with this but show many symptoms.

Dominate symptoms would be swelling, burning nerve pain and numbness and weakness due to nerve involvement either in one area or all over the body.

I have not been diag. with this but have been told that I have an infection in the nervous system, possible bacterial and viral, as I never had chicken pox as a child and was exposed to this virus after having the bulleye's rash.

Have not seen a lot a complaints like mine, where this symptom dominates all others.

Trying to determine what is causing most of my problems, because before I was exposed to chicken pox, I had few symptoms of lyme and suspect that the virus has caused with a lot of problems and brought the lyme out full force, because of infection and weakness in my body. High chance that I have both viral and bacterial infection in the nervous system, rare situation as most people have had chicken pox as a kid. I have not and have been tested twice.

Would really like to hear from people who have the nerve problems, because the main symptom is burning, very painful.

Thank you for the feedback.
Lymiecanuck
 

Almost the type of burning you feel when you put your hand in a cold icy mountian river until it stings?? but deep at the bone level?

If so, that is what my daughter experienced. She had weakness and tremors as well.

She would also experience intermittent swelling like in her fingertips (we called her ET) and other parts of her body. They would resolve on their own, but reappear elsewhere.

She has undergone 2 1/2 years of aggressive lyme treatment and the pain is almost under control now. There are days when we can not control it, but those have been fewer and farther between. She also noted that the deep burnign pain resolved when the M. Fermentans and bartonella were agressively treated so I dont know if they are associated with lyme only or lyme and bart and M. Fermentans.

Best of luck hope this helps some.

Theresa

 

I don't think most doctors understand the cause of PN in association with Lyme. Is it that borrelia are munching on the nerves? Is it autoimmune due to a chronic infectious state? Is it antibiotics (cancer and HIV patients get PN from prolonged use of certain medications)? Is it temporary or permanent? Can it get worse or better?

The neurologist will be testing my nerves using EMG and perhaps nerve conduction studies. I've heard it reported that the EMG is pretty awful -- getting stuck with needles and electrical impulses that feel like you're getting shock therapy and tooth pain at the same time. This can measure nerve conduction latency, but apparently can also help determine if the PN is axonal or demyelinating. Don't ask me how.

There are also other tests -- myelin IgM and myelin IgG antibody tests for autoimmune PN. And depending on what the tests reveal, there are medications, beyond antibiotics, that can control pain or even reduce the PN.

I'll let you know what the neurologist does and says. I did not want to assume this problem would go away when Lyme goes away, since it could be extremely debilitating should it worsen or if the constant pain comes back.

Pooch

Poochini, We look forward to hearing what that doctor says. Mine is only getting worse and now even my thumb is "locking" up.

The pain is great. Other than fatigue, my lyme symptoms started with numness.

This is a very common symptom of LD patients.
 

My burning pain does go to bone but not always, like being in fire when at it's worst. Burning skin big symptom.

As well I have had emg on lower left leg at begginnning of worst symptoms showed up normal but haven't been tested since and suspect it would be different now as problem has continued bigtime and have figured out that nerve inflamation is a big problem when this gets out of control.

The emg was not that bad, have done the needles as well, will need to get these done again.

Did the nerves on your daughter's head burn as well? What about burning all over?

LYmiecancukk
 

I am sorry that you are suffering with nerve pain.

I have the stabbing burning pain in my spine. This particular bout has lasted non stop for 4 months. I have numbness in my feet, hands, face etc. It's almost impossible for me to stand up straight due to the weakness and the pain in my spine. I often wonder how I would actually feel without this constant pain.

I suspect that it is the herpes virus and am trying to hit it hard with Rife and colloidal silver.

I tried several pain medications a few months back and nothing helped. Ice packs give me some relief as do capsicum patches.

I have my fingers crossed that you will get some answers soon. This kind of pain can truly wear you down.

Poochini,
I'll be interesed to hear how your Dr appt. went. Good luck.

Cheers!

Jeannie

I'm wondering if I too can ask for the mystery name of the doc , Poochini ( and I love your nick too by the way! )
 

Thanks for your replies, it helps to know that I am not one of few with this problem, as this is the most devastating, and disabling. At my worst, I used to dream that someone was smashing my head in with a baseball bat and it gave me peace to dream this becasue i felt like I was being burned alive. It has calmed down and I am better, but it put severe fear into me and I couldn't do it again.

I will research the transverse myletis, the first neuro, said maybe demylienation in the back then went back on that said all in my head. Recent low back mri, good. So I suspect at this point inflammation which will lead to demylienation if not brought under control.

Thanks again
Lymiecanuck
 

I spent 4 winters in Canada but got LD next door in 6/95 in Vermont. I tried to shake off the encroaching fatigue and weakness, but by 6/97 was too weak to walk. No nerve pain like you, but was wracked by muscle pain. My HMO diagnosed CIDP/GBS and treated it two years. Along the way my formerly optomistic neorologist said i would be paralyzed and on IVIG 1 gram per kilo for the rest of my life. 5/99 i began IV anti-biotics for LD over the violent protests of my HMO Infectious disease doc and HMO neorologist.

Those treatments enabled meto get off the devil's CIDP merry go round. On the way I had two EMG's. According to a book I read, if you have tick paralysis the EMG F wave prolongation will indicate so.

Poochini: you hit the nail on the head.

Doctors at Pittsburg U (PA)supposedly cured Lyme paresis by a five day course of IVIG.

Let us know how you do!

Neil

I have twitching, wasting, weakness, tingling sensations, burning sensations and severe nerve pain (very deep) at times. No numbness but I have extreme hypersensitivity.

There are times when I can't move my entire arm because it is so weak and hurts so bad, then that goes away.

I just had my second EMG/NCV in the past 4 months. Both studies were normal. The second study did detect Carpel Tunnel syndrome in my right hand (the arm that causes me problems) and some nerve problems in both forearms, but nothing significant that would indicate any other disease. I also thought that the EMG would have detected a problem in my leg but it didn't.

I've been on oral Zithro and then oral Doxy at different times over the past 3 1/2 months. No measurable improvement yet. Expect to start on IV Rocephin soon.

 

I then saw some other doctors in the center who did the EMG and nerve conduction tests. I thought they were both about as bad, which wasn't terrible. Only one time, when he was moving the needle back and forth to hit the muscle right, did I grit and airclean my teeth.

The results showed nothing out of range. He ordered an MRI of my spine and about 50 blood tests. I was shocked when I saw how many --everything from IgG and IgM antibody to Sjorgen's. I will also be getting a skin biopsy. At least he seems very thorough. We may not find anything out, and my neuropathy will be just part of having Lyme. But I'll know I did check to see if there was anything else that could be done to make sure it does not get worse.

Other update: My LLMD said my mercury levels came back high, 22 versus high normal at 14. The neurologist, however, did not think that was high enough to cause neuropathy. I am thinking the mercury increased AFTER I took out the amalgam fillings, because I inhaled or swallowed the dust as it was being ground out and removed.

I did ask the reason for the MRI. He said he wants to make sure I don't have a lesion going on in my spinal cord, since I have them in my brain.

I'll keep you updated if anything interesting is found.

Pooch

 

I am changing my primary care physician, by coincidence, to someone who is both lyme savvy and is a maven on mercury toxicity. My original PCC is retiring and she still maintains that all those lesions in my brain were normal.

Meanwhile, the neurologist is doing the MRI on my spine because there were all those lesions in my brain....

Everyone has an opinion.

Pooch

I experience it mainly on my left side. The left side of my scalp is the latest place this started. I go between burning feelings to something I can only describe as a wave of warm air or water flowing over the skin.

I have to say the worst pain is in my left forearm and hand (mainly the little and ring fingers). Unfortunately I'm left handed and it has made life hard on me since it is hard to use that hand for anything.

It is horrible!! I don't know if it has anything to do with Chicken Pox... I did have that as a child, and had shingles in my early 30's... atypical. I had my first bullseye rash when I was 20. I have had LD almost half my life!!!!!!!!

When will they find a cure??????
 

Some days I feel almost normal, except fatique and low grade fevers which is walk in the park compared to the other stuff, nerve pain is almost non - existant the last few days, seems like a miracle, hope it stays away, cause I don't need that.

Wishing everyone well
Lymiecanuck
 

Diane
 

Lymiecanuck
 

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4: Pohl-Koppe A, Logigian EL, Steere AC, Hafler DA.
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7: Linssen WH, Gabreels FJ, Wevers RA.
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10: Duray PH.
Clinical pathologic correlations of Lyme disease.
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13: Christen HJ, Hanefeld F.
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14: Rousseau JJ, Lust C, Zangerle PF, Bigaignon G.
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1: Gevers G, Lemkens P.
Bilateral simultaneous facial paralysis--differential diagnosis and treatment
options. A case report and review of literature.
Acta Otorhinolaryngol Belg. 2003;57(2):139-46. Review.
PMID: 12836471 [PubMed - indexed for MEDLINE]

2: Kacinski M.
[Acquired inflammatory neuropathies in children and their therapy]
Neurol Neurochir Pol. 2001;35(4 Suppl):97-109. Polish.
PMID: 11873621 [PubMed - indexed for MEDLINE]

3: Yushchenko M, Weber F, Mader M, Scholl U, Maliszewska M, Tumani H,
Felgenhauer K, Beuche W.
Matrix metalloproteinase-9 (MMP-9) in human cerebrospinal fluid (CSF): elevated
levels are primarily related to CSF cell count.
J Neuroimmunol. 2000 Oct 2;110(1-2):244-51.
PMID: 11024556 [PubMed - indexed for MEDLINE]

4: Bizovi K, Emerson L.
Clinicopathological conference: a case of ascending numbness.
Acad Emerg Med. 2000 Apr;7(4):365-71. No abstract available.
PMID: 10805625 [PubMed - indexed for MEDLINE]

5: Thies FL, Karch H, Hartung HP, Giegerich G.
Cloning and expression of the dnaK gene of Campylobacter jejuni and
antigenicity of heat shock protein 70.
Infect Immun. 1999 Mar;67(3):1194-200.
PMID: 10024560 [PubMed - indexed for MEDLINE]

6: Vital C, Vital A, Lagueny A, Larribau E, Saintarailles J, Julien J.
Subacute inflammatory polyneuropathy: two cases with plasmacytoid histiocytes
in the endoneurium.
Ultrastruct Pathol. 1998 Sep-Oct;22(5):377-83.
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7: Shapiro EE.
Guillain-Barre syndrome in a child with serologic evidence of Borrelia
burgdorferi infection.
Pediatr Infect Dis J. 1998 Mar;17(3):264-5. No abstract available. Erratum in:
Pediatr Infect Dis J 1998 Jun;17(6):481.
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8: Peterova V, Fialova L, Mikulikova L, Malbohan I.
[Antiphospholipid antibodies in patients with neurologic diseases]
Sb Lek. 1996;97(3):377-83. Czech.
PMID: 9235618 [PubMed - indexed for MEDLINE]

9: Rosler KM, Magistris MR, Glocker FX, Kohler A, Deuschl G, Hess CW.
Electrophysiological characteristics of lesions in facial palsies of different
etiologies. A study using electrical and magnetic stimulation techniques.
Electroencephalogr Clin Neurophysiol. 1995 Dec;97(6):355-68.
PMID: 8536586 [PubMed - indexed for MEDLINE]

10: Creange A, Meyrignac C, Roualdes B, Degos JD, Gherardi RK.
Diphtheritic neuropathy.
Muscle Nerve. 1995 Dec;18(12):1460-3.
PMID: 7477070 [PubMed - indexed for MEDLINE]

11: Gutknecht J, De Wazieres B, Fest T, Dupond JL.
[Guillain-Barre syndrome associated with Lyme disease]
Presse Med. 1994 Mar 12;23(10):490. French. No abstract available.
PMID: 8022727 [PubMed - indexed for MEDLINE]

12: Horneff G, Huppertz HI, Muller K, Voit T, Karch H.
Demonstration of Borrelia burgdorferi infection in a child with Guillain-Barre
syndrome.
Eur J Pediatr. 1993 Oct;152(10):810-2.
PMID: 8223782 [PubMed - indexed for MEDLINE]

13: Reimers CD, de Koning J, Neubert U, Preac-Mursic V, Koster JG,
Muller-Felber W, Pongratz DE, Duray PH.
Borrelia burgdorferi myositis: report of eight patients.
J Neurol. 1993 May;240(5):278-83.
PMID: 8326331 [PubMed - indexed for MEDLINE]

14: Rostami AM.
Pathogenesis of immune-mediated neuropathies.
Pediatr Res. 1993 Jan;33(1 Suppl):S90-4. Review.
PMID: 8381954 [PubMed - indexed for MEDLINE]

15: Serratrice G.
[Polyneuritis, polyradiculoneuritis, polyneuropathies: development of a
concept]
Rev Prat. 1992 Jan 1;42(1):9-17. Review. French.
PMID: 1565994 [PubMed - indexed for MEDLINE]

16: Weller M, Stevens A, Sommer N, Wietholter H.
Are CSF or serum ganglioside antibodies related to peripheral nerve
demyelination in neuroborreliosis, Guillain-Barre syndrome, or chronic
inflammatory demyelinating polyradiculoneuropathy?
Eur Arch Psychiatry Clin Neurosci. 1992;242(2-3):122-6.
PMID: 1486101 [PubMed - indexed for MEDLINE]

17: Lopez de Munain A, Espinal Valencia JB, Marti-Masso JF, Perez-Trallero E,
Garcia-Arenzana JM.
Antibodies to Borrelia burgdorferi in Guillain-Barre syndrome.
Lancet. 1990 May 12;335(8698):1168. No abstract available.
PMID: 1971906 [PubMed - indexed for MEDLINE]

18: Brogan GX, Homan CS, Viccellio P.
The enlarging clinical spectrum of Lyme disease: Lyme cerebral vasculitis, a
new disease entity.
Ann Emerg Med. 1990 May;19(5):572-6.
PMID: 2331105 [PubMed - indexed for MEDLINE]

19: Mancardi GL, Del Sette M, Primavera A, Farinelli M, Fumarola D.
Borrelia burgdorferi infection and Guillain-Barre syndrome.
Lancet. 1989 Oct 21;2(8669):985-6. No abstract available.
PMID: 2571897 [PubMed - indexed for MEDLINE]

20: Bouma PA, Carpay HA, Rijpkema SG.
Antibodies to Borrelia burgdorferi in Guillain-Barre syndrome.
Lancet. 1989 Sep 23;2(8665):739. No abstract available.
PMID: 2570981 [PubMed - indexed for MEDLINE]

21: Hansen K, Hindersson P, Pedersen NS.
Measurement of antibodies to the Borrelia burgdorferi flagellum improves
serodiagnosis in Lyme disease.
J Clin Microbiol. 1988 Feb;26(2):338-46.
PMID: 3343329 [PubMed - indexed for MEDLINE]

22: Meier C, Grehl H.
[Vasculitic neuropathy in the Garin-Bujadoux-Bannwarth syndrome. A contribution
to the understanding of the pathology and pathogenesis of the neurological
complications in Lyme borreliosis]
Dtsch Med Wochenschr. 1988 Jan 29;113(4):135-8. German.
PMID: 3338392 [PubMed - indexed for MEDLINE]

23: Persuy P, Arnott G, Fortier B, Ajana F, Blondel M, Fourrier F, Dewilde A,
Maniez-Montreuil M.
[Guillain-Barre syndrome with favorable outcome in a case of recent human
immunodeficiency virus infection]
Rev Neurol (Paris). 1988;144(1):32-5. French.
PMID: 2831607 [PubMed - indexed for MEDLINE]

24: Suchanek G, Kristoferitsch W, Stanek G, Bernheimer H.
Anti-myelin antibodies in cerebrospinal fluid and serum of patients with
meningopolyneuritis Garin-Bujadoux-Bannwarth and other neurological diseases.
Zentralbl Bakteriol Mikrobiol Hyg [A]. 1986 Dec;263(1-2):160-8.
PMID: 3577478 [PubMed - indexed for MEDLINE]

25: Ryberg B, Hindfelt B, Nilsson B, Olsson JE.
Antineural antibodies in Guillain-Barre syndrome and lymphocytic
meningoradiculitis (Bannwarth's syndrome).
Arch Neurol. 1984 Dec;41(12):1277-81.
PMID: 6333863 [PubMed - indexed for MEDLINE]

26: Hornig CR, Busse O, Dorndorf W.
[Characteristic cerebrospinal fluid findings and clinical aspects of
lymphocytic meningoradiculitis]
Klin Wochenschr. 1984 Jan 2;62(1):30-4. German.
PMID: 6700186 [PubMed - indexed for MEDLINE]

Comment:
I don't want to risk boring you with anymore of these searches. If you want to hunt for the abstracts yourself, then here is the link to PubMed. Just enter the PMID # into the query box and hit "go" -- or else repeat the same search as I did to collect all of them at one time. When you get the citations, then just click on the top line which will take you to the page with the abstract.

To print out the abstract, you must highlight it or else it won't format properly and your printer will cut off the print on the right hand side of the page. To avoid that, highlight only what you want to print and it will format itself nicely to fit your computer paper.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
 

There's alot there. Today it is all over now, and bad headache to go with it. Was exposed to mold and wonder if this could trigger it. I will look.

Thanks again
Lymiecanuck
 

I've seen videos at medical conferences of persons who had seizures, upon re-exposure, after they have become sensitized to a toxic mold (like the notorious Stachybotrys). That's how bad certain neurotoxic molds can be. Why? I dunno', and I'm not sure anyone can explain the mechanism exactly. It's just the way it is, that's all. AVOID toxic molds if you suspect that they are setting off your symptoms. Period.
 

B12 has helped some. Ambien seems to help. When Ambien starts to make me sleepy the pain seems to subside, it must slow down nerve impulses. I can take this pain everywhere else but my head. I've had nerve conduction tests over the last several years (but only diagnosed with Lyme in July) and they are always normal. The only thing that isn't normal is the eeg which shows abnormal electrical activity in my brain. But I don't know if this is related because the seizure meds did nothing.

Also tremors, weakness, sometimes my limbs don't do what I want them to do. Also some dizziness and fainting. My Biggest complaints are all neuro. I can take pain in my limbs but the seizure like activity and pain in my head is something else.

So it's Ambien, b12 and some pain meds for me. Sometimes a hot bath helps for short periods at a time.
 

Gopats that's it. You described it to a T. The head is the worst and my scalp gets very tender. Inside outside, different areas and spots. Even the eyes too. It really is hell.

Txlymemome - My husband was cleaning up mold in a spot he let go and I have been after him for months. He disturbed the stuff, so I feel this is a possible contrubutor, but I haven't been feeling well either, before this. It was a large area like 2 feet by 6 feet. Some people just don't understand these things. I have had all these symptoms and more before treatment.

I also have been suspecting a relapse, but I feel a bit better today so who knows. It is a miracle I haven't completely lost my mind.

I qualify for medicinal marijuana and am going to get some to see if helps with pain and when my nervous system get really sensitive and I feel like I could short out a wire in my brain I am buzzing so much.

Thanks
Lymiecanuck
 

Gopats that's it. You described it to a T. The head is the worst and my scalp gets very tender. Inside outside, different areas and spots. Even the eyes too. It really is hell.

Txlymemome - My husband was cleaning up mold in a spot he let go and I have been after him for months. He disturbed the stuff, so I feel this is a possible contrubutor, but I haven't been feeling well either, before this.

It was a large area like 2 feet by 6 feet. Some people just don't understand these things. I have had all these symptoms and more before treatment.

I also have been suspecting a relapse, but I feel a bit better today so who knows. It is a miracle I haven't completely lost my mind.

I qualify for medicinal marijuana and am going to get some to see if helps with pain and when my nervous system get really sensitive and I feel like I could short out a wire in my brain I am buzzing so much.

Thanks
Lymiecanuck
 

Anti-inflammatory herbs? Lion's mane to protect myelin?
See Dr.Zhang?
dq

[This message has been edited by DiffyQue (edited 13 April 2004).]
 

Started another topic on this and completely forgot I posted before, getting lyme brain again and i am so distraught. Doing everything I can think of to stop it. Don't know what else to do.

Warm epsom salt bath with baking soda was soothing last night, but felt worse after. like it aggravated it. Doesn't make sense. LIke my skin is so sensitive that I can wipe with a towel cause this sets them off. Showers can set it off too.

Went to dr - rx for pt who thought it might be impinged disk however now we know it is Lyme. Since starting doxy - my calves feel "weird" almost numb - it is difficult to explain. Pretty much every day now my calves feel weird.

Still have issues with both arms - sometimes tingling in fingers, starting in elbows moving down, occ still start at shoulder.

Fatigue has been the worst these past two weeks - and as I've found, pain tolerance decreases the more tired I am.

I sympathisize with the magic act of "now it's numb and now it's not"

Hope you're feeling better soon.
 

I have what I like to call my "bacon sizzle". It starts at the base of my skull and runs halfway up the back of my head. It sounds like a skillet of bacon cooking and lasts for a few seconds. I can feel it and hear it. Sometimes it sounds like an electrical shock.

Could this be the same thing?
 

I estimate I have been infected since 1988. Never received antibiotics till 1997.

I have had a variety of symptoms. The worst in 1997 was horrible burning in my feet that made it virtually impossible to walk. That and weakness in my right leg.

I have been on oral antibiotics off and on since then, with a 10 week course of IV Rocephin two years ago.

Pain is confined now to my lower back and legs, but I have to admit it is usually managed well with Advil.

I walk with a cane. It helps me maintain balance (which is very bad). I don't lift up my feet high enough especially when I am stressed or tired. Sometimes I walk almost like a normal person. My legs often feel like tree trunks.

I have had MRIs, EMGs, Xrays, blood tests, etc. etc. They all produce normal results.

In the meantime, I still have extreme difficulty walking.

P.S. Please stay away from steroids!!!
 

My husband was told he had MS and a nerve specialist in Texas said it was herpes in the nervous system..He said my infection was so bad, I could not even take antivirals because of the severe reaction I had!!! He said I was the sickest he has ever seen with a neruo-herpes infection...

My hubby is getting better on antivirals..yet I think he also has lyme and metal toxcicity which need to be addressed...